Adult Cystic Fibrosis Program
Adult Cystic Fibrosis Program
This patient and family guide (PDF) outlines the Adult Cystic Fibrosis Program at Nova Scotia Health.
What is CF?
"Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure. CF causes various effects on the body, but mainly affects the digestive system and lungs." Learn more from Cystic Fibrosis Canada.
Our team
| Cystic Fibrosis Physicians | |
|---|---|
| Cystic Fibrosis Nurse Coordinator | Sarah Sutherland 902-473-4147 |
| Cystic Fibrosis Dietician | Carly Nichols |
| Physiotherapists | Heidi Kent Paulina Miller |
| Psychologist | Sulaye Thakrar |
| Respiratory Therapist and Research Coordinator (Division of Respirology and CF Clinical Trials) |
Andrea Dale |
| Social Worker | Kayla O'Hearn |
Guide
This guide will help you learn about the services that the Adult Cystic Fibrosis Program offers and how you can access them.
- Adult Cystic Fibrosis Program [PDF - NSHA Library pamphlet - Revised 2020]
Transition process
When you reach age 18 or graduate from Grade 12, you will transition from the IWK to the Halifax Infirmary CF Clinic.
You will meet the Adult Program CF Team during your last IWK appointment (in the spring/summer) before you transition. All future appointments will be at the Respirology Clinic located on the 4th floor of the Halifax Infirmary (HI).
Clinics are held on Tuesday afternoons or Friday mornings, where you will see one of our CF physicians, nurse, dietician, social worker, physiotherapist, respiratory therapist and psychologist. Your pulmonary function tests (PFTs) are done the same day as your clinic appointment in the PFT lab located on the 3rd floor of the Halifax Infirmary (during COVID-19 pandemic) or at the clinic.
When you arrive for your appointments, you'll register for your appointment at the 4th floor kiosks located just inside the Halifax Infirmary – Robie Street Entrance. You are notified of your clinic appointments via a letter in the mail.
If you need to get admitted to hospital, you will be admitted to one of the Medicine units on the 8th floor of the HI. Your CF physician and team will follow your care closely with daily visits from your CF nurse and as needed from your CF dietician. You will be in a private room with your own microwave and mini fridge.
We look forward to meeting you!
Metropolitan dispensary
The Metro Dispensary provides low-cost prescription medications to individuals with low income and to anyone who is unable to afford the medication that they are being prescribed. A referral is required.
Patients can reorder their medications by email.
Email: metro.dispensary@ns.aliantzinc.ca
NS CF Drug Plan
Patients who are Nova Scotia Residents:
- All medications are covered without a co-pay.
- You will need to pay the dispensing fee for transplant medications.
- If a patient’s compressor breaks, please bring the broken compressor to the IWK Chest Clinic (beside Metro Dispensary) for replacement. This is covered by the NS CF Drug Plan.
Research
Our current and upcoming clinical trials for Cystic Fibrosis (as of Nov 2020).
| Vertex VX 18-445-113 |
Current | A Phase 3, Open-label Study Evaluating the Long term Safety of VX-445 Combination Therapy in Subjects with Cystic Fibrosis |
|---|---|---|
| Vertex VX 14-661-110 |
Current | A Phase 3, Open-label, Rollover Study to Evaluate the Safety and Efficacy of Long-term Treatment With VX-661 in Combination With Ivacaftor in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous or Heterozygous for the F508del-CFTR Mutation |
| AbbVie M19-530 |
Upcoming | A Phase 2 Study of ABBV-3067 Alone and in Combination with ABBV-2222 in Cystic Fibrosis Subjects Who Are Homozygous for the F508del Mutation |
| Gene Modifier Study | Upcoming | Mapping and Isolation of Genes Influencing Severity of Disease in Cystic Fibrosis |
| CAR-CF Study | Upcoming | COVID-19 Antibody Responses in Cystic Fibrosis (CAR-CF) Patients |
News and events
- March 1, 2022 - Breathing a little easier: Nova Scotia Health plays important role in development of new cystic fibrosis drug (Nova Scotia Health News)
- Applications for the 2022-2023 Vertex Foundation Scholarship will be accepted from December 6, 2021 to February 1, 2022. Scholarships are awarded to help people with cystic fibrosis and their immediate family members (siblings, caregivers, children and spouses) pursue collegiate two-year, four-year or graduate degrees. Learn more on Vertex's website.
- November 18, 2021 - Province of Nova Scotia Covers Cost of New Cystic Fibrosis Drug (Trikafta)
Links
| Cystic Fibrosis Canada | https://www.cysticfibrosis.ca |
|---|---|
Cystic Fibrosis Canada - Atlantic Canada Region |
|
| Facebook - Cystic Fibrosis Canada | https://www.facebook.com/CysticFibrosisCanada |
| Facebook - National Advocacy Network | https://www.facebook.com/groups/285372655760777 (join the private group) |
| FEV1 percentile calculator for Canadians with cystic fibrosis | https://cfpercentile.research.sickkids.ca/ (Strug Lab) |
| Toronto Adult Cystic Fibrosis Centre | https://torontoadultcf.com (St. Michael's Hospital) |
| Toronto Lung Transplant Program | https://www.uhn.ca/Transplant/Lung_Transplant_Program (Toronto General Hospital) |
Contact information
Patients of the CF clinic can call the nurse coordinator at 902-473-4147.